From Clare to Here – A Reflection, by Martin Tobin

From Clare to here

 

 

Who am I?

My name is Martin Tobin I am from Newmarket-on-Fergus near Shannon, Clare. I was educated at St. Anne’s special school in Ennis, Clare where I spent fourteen years of my youth.  I think it was in 1989 that a group came down from Dublin to Bunratty to get a CPI sports group going in Clare. For a while after that, during the summer I used to do sports with CPI (Cerebral Palsy Ireland) in Ennis. We used to meet in the Fair Green in the town on a Saturday morning. We trained for big events in the year – one in Tullamore Offaly, and the other in UCC in Cork city which was held in August: as far as I remember these were the national finals and Tullamore was the semi-finals a.

The sports finished up sometime around 1992/3 and the following year we went on our first holiday to Marina clinic/school, Bray Wicklow where we would stay for ten days. I think this finished up in 1996 and the following year we went to Trabolgan in west Cork.

When I left school in 1999 I started working in the local Super Valu part time which I got through EmployAbility. This left me free to attend a rehabilitation course in the Dulick centre in Ennis two days a week. In the Dulick Centre, I participated in horticulture, arts and crafts, independent living skills and Information Technology. For most people it would a four year course, but because I was only doing two days a week, I had seven years to do.

Although that seems like a awful long time I enjoyed it! As they say “time flies when you’re having fun.” It was here that I got my flair for Self Advocacy when I was on the first ever committee in 2003. By the time my time was up in 2006, I was typing up the menus for the In-House Gallery restaurant.

When it was my time to leave in 2006, I started in sheltered employment in creative ceramics also in Ennis (while still having my part time job) where we participated in making crockery. It was a nice place to work, but there was no advocacy group despite my many attempts to start one! We finally got one going in 2013. Things were quite slow in this group until we move to the Dulick in early 2015. After a while in the Dulick, we joined up with existing sheltered workers Self Advocacy group. Our only victory was when they tried to cut out the in-house dinners in June 2016.

Path to CLF (Clare Leader Forum)

My entry on the independent living scene happened quite by accident, as vice chairman of the Self Advocacy Group in the Dulick centre in Ennis I longed for better communications between the different service providers in the region. When I heard Clare Leader Forum were trying to create a peer support group with people from across the services providers it suited me to the ground.

My first engagement with Clare Leader Forum was a session of committee training in the CLDC offices in Ennis where, as the title suggests, I learned the basics of committee skills and how to run a committee correctly. At these meetings that everyone agreed that some form of an advocacy platform was needed, but nobody knew where to start.

By the time the classes were nearing completion, my confidence was growing. Therefore, I put a proposal to the group which I entitled “mission possible” which led out several steps that I felt could carried out and at least needed to be looked at. It highlighted seven major issues which were transport, jobs, funding, social life, accessibly & independent living, new directions and parent/guardian’s view.

Transport at the time was becoming a major concern in country Clare as the DPOC transport service was to be suspended if it was not suspended already My memory isn’t too clear on that. Funding of any kind was hard to get. I also experience this difficulty in securing funding in my drama group.

Social life, as well as employment, can be hard to come by for people with disabilities in rural areas. New Directions, for those of us that don’t know, is a program brought in by the powers that be in recent years as a new way of running day centres. It seems to meet the approval of parents and guardians because I think that in most cases parents and siblings and not being told enough news about what is going on in the lives of those with disabilities.

There was also the suggestion that we have what I called a “Social Inclusion Fair”, which could include up to twenty two different groups including as many service providers as we could encourage to come along. This initiative would eventually become “Achieving the Future we Want” which was held on 2nd December 2016, where I had the honour of speaking on the same stage as Ann Marie Flanagan and the late Donal Toolan.  We also held a transport conference in Clare called “Transport for All” on 26th May 2017 which seems to have been very successful.

How things stand

The current state of affairs is very disappointing for the people that have been advocating since the UNCRPD was signed ten years ago. However for a John Doe like me who never ever heard of the UNCRPD until joining the Clare Leader Forum, it seems all right on the one hand because you don’t know much else, until you hear about the UNCRPD and you think what is that I have to get to know about it! But it’s so hard to get information on it that is easy to read and understand and what makes it worse is that it’s difficult to inform people about its benefits when there’s so little info about it out there.

Worse still, it seems to me (from the little I know these things) that there is more benefits it in for the intellectually disabled that the physically disabled, despite the fact that it is mainly the physically and sincerely disabled that out there protesting about it. For example, we know that it has been illegal since 1993 for someone with an intellectual disability to get married, but when you say that to most people they say WHAT! It is hard to believe so what we actually need is an easy to read booklet on what the UNCRPD really means, and we should find a way of informing parents and guardians of its importance also.

The Future

On that note there is one point I really think needs to be made. Below is a list of just some of the Leaders we intend remembering on 23rd September next.

Martin Naughton   Galway

Donal Toolan                   Ballyhaunus, Mayo

Joe T McCann                 Donegal

Florence McDougal          Donegal

Michel Corbett                 Newport, Mayo

Tom King               Tulla, Clare

Bridge Cox            Corofin, Clare

Dermot Walsh                 Dublin

Patricia Kelly                   Clare

 

 

 

What really stands out to me if I may say is that most on this list are from the heart of rural Ireland and not from inner city Dublin so the best way to remember them is to spread the word about the UNCRPD far and wide.

I believe that after the commemorative event that is due to take place in September, I think we need to organise three or four regional events to spread the word about what we are trying to achieve. Here are some observations on what issues could be look at in the future.

 

  • There are not very many family members (of people with disabilities) that understand the We need a booklet explaining UNCRPD and we need this as soon as possible.

 

  • In recent times the Irish  government has launched two major interactive for rebuilding our country “Realising our Rural Potential” and “Creative Ireland 2017-2022” . I feel that we should make sure that both of these are accessible and inclusive for people with disabilities

 

  • On the issue of personal assistants I think we should try and converse with what body advocates for PAs to see if we can come with a solution to this issue

 

  • The school holidays seem to be very hard on parents of kids with intellectual disabilities practically around the age twelve or thirteen (around the time they leave primary school for secondary school) and again around the age of seventeen or eighteen when they leave secondary school for either a job or a rehabilitation course. Perhaps we could look at organizing some kind of activity at these ages, sports day, day trips or maybe some kind of a break.
  • I think we also need to get the business community on board we need to advocate advantages of working with the disabled community to create a fully accessible inclusive society, in the catering, retail and tourism sectors. By telling them that accessibility and inclusion are good for business, i.e. “we will spend money as long as we can access your premises”!

 

  • I believe there is a need to separate direct payments from the UNCRPD if there is a difference (which I think there is) or package them together if they are one and the same.